Please Help Find a Cure for Neurofibromatosis

As many of you know, my daughter and her two daughters have neurofibromatosis (NF), a genetic disorder in which tumors grow on nerve endings all over the body, inside and out. These tumors are disfiguring at the least, and debilitating and sometimes fatal at their worst. Our family is commited to NF awareness and research, hoping one day to end this dreadful disorder.

To that end, here's a message from John Risner, president of the Children's Tumor Foundation
http://www.ctf.org

I am sending this email to all supporters of NF research to ask for their help this year. We are proud of the advances in NF research that we have been able to be a part of, but we readily acknowledge that federal funding has been critical to this progress. In 1996 neurofibromatosis (NF) was added to The Congressionally Directed Medical Research Program (CDMRP)as one of eight disease groups. Since then this program has funded over $125 million in NF research and has been the driving force in the development of NF cell lines, drug target identification, animal model development and now is moving into clinical trial funding.

The House of Representatives included a $25 million appropriation for NF research as part of the CDMRP for FY2010. This restores the program to its FY2005 level, which had declined to $10 million in FY2009. The Senate will begin their deliberations on this bill when they return after Labor Day.

I am writing to ask you to take five minutes in the next two weeks to contact your Senators to ask for their support. A personal letter, faxed or mailed, has the most impact, but calls and emails will help as well. While all voices are important, the Senators below are members of the Appropriations Committee and key subcommittee. If you live in one of these states, your letters and calls are particularly important.

Key points to include in your communications are to thank them for the Senate's past support of this vital program, and ask for their support this year to preserve the $25 million that is included in the House budget. A history of our advocacy program, recent updates and sample letters for downloading can be found on our website at http://www.ctf.org/How-You-Can-Help/advocacy.html.

Thank you for your past support. I hope you will take the time not only to act on this modest request, but to leverage your action by forwarding this email to family and friends and ask them to join you. The more supporters that reach out to their Senators, the greater our chances of preserving this vital funding.

If you have any questions about our advocacy program, or the legislative process for NF research, please don't hesitate to contact me by phone or email.

Best regards,

John Risner, President
Children's Tumor Foundation
Ending Neurofibromatosis Through Research
95 Pine St. 16th Floor
NY NY 10005
212 344-6633 x249
http://www.ctf.org


Democratic Subcommittee Members

* Senator Daniel Inouye (Chairman) (HI)
* Senator Robert C. Byrd (WV)
* Senator Patrick Leahy (VT)
* Senator Tom Harkin (IA)
* Senator Byron Dorgan (ND)
* Senator Richard Durbin (IL)
* Senator Dianne Feinstein (CA)
* Senator Barbara Mikulski (MD)
* Senator Herb Kohl (WI)
* Senator Patty Murray (WA)
* Senator Arlen Specter (PA)

Republican Subcommittee Members

* Senator Thad Cochran (MS)
* Senator Christopher Bond (MO)
* Senator Mitch McConnell (KY)
* Senator Richard Shelby (AL)
* Senator Judd Gregg (NH)
* Senator Kay Bailey Hutchison (TX)
* Senator Robert F. Bennett (UT)
* Senator Sam Brownback (KS)

~~~~~

It's me again. :)

My daughter recently married, despite the very real possibility that she's spend the rest of her life alone. People with tumors all over their bodies aren't prime candidates in the marriage mart, after all. You can read all about it and see some pictures here:
http://www.textyladies.com/2009/08/24/romance-is-in-the-air/


Down Home Ever Lovin' Mule Blues (See the Book Video featuring Justin Saragueta)
Jacquie Rogers * 1st Turning Point * Myspace * Twitter * Facebook
Faery Special Romances * Book Video * Royalties go to Children's Tumor Foundation, ending Neurofibromatosis through Research

Scandal: Little Joe Monaghan

Joe Monaghan rode into Ruby City, Idaho Territory, on a quality mare in 1867. Like others there, he was looking for a bonanza at the gold and silver mines to create a new life for himself. Unlike the others, he was too young to grow a beard, slight of stature, and didn't carry firearms.

Historian Mildretta Adams wrote, "A man could live a lifetime in the early days, known only by a nickname. His "handle" may have been acquired by an incident in his life, his profession, or some distinguishing characteristic. By the same token a man could live and work among others, and be accepted at face value, and no questions asked about the past."

The old-timers (those who'd managed to survive the harsh climate, high altitude, and heavy labor for a year), reckoned it would only be a matter of time before Little Joe headed back East with his tail between his legs, the same as most greenhorns.

The rugged men of Owyhee County scoffed at greenhorns throwing down their shovels and heading for softer country. Little Joe, however, soon earned the respect of even the toughest of men because even though the work was back-breaking, he never faltered. As it turns out, the backaches and the blisters on his hands, didn't faze him, but the scanty findings soon forced him to seek other work, as with so many other optimistic miners.

Soon, he quit his claim and went to work at odd jobs, then started raising small livestock and sold meat, milk, and eggs to the residents of Ruby City. He lived frugally in a small shack for several years, minding his own business and staying away from the bars and bawdy houses.

Eventually, he took the lonely job of a sheepherder; later, a cattle hand. Eventually he settled down on a homestead ten miles from Rockville, Idaho. A responsible citizen always, he never missed voting in an election and always served on juries and posses when called upon.

All along,he was known as an outstanding bronc buster as well as horse trainer, and wrangled the remuda on several roundups. He even performed as Cowboy Joe in Whaylen's Wild West Show: the Greatest Show on Land or Sea. Whaylen would pay $25 to any man who brought a horse that Joe couldn't ride.

But after a year, Joe couldn't tolerate city life any longer and went back home to Rockville, where his closest friend and only company was his Chinese cook. When the cook died, Joe became even more withdrawn from friends and neighbors. In late 1903, Joe took sick and died in January, 1904, of a coughing fit.

The neighboring ranchers came over to prepare him for burial. But . . .

He was a SHE! The tough old ranchers had been fooled for over 30 years. Little Joe Monaghan, the miner, bronc buster, and rancher, was a woman. The tiny town of Rockville was, well, rocked. News spread far with headlines splashed on newspapers across the nation.

No one knows for sure exactly who Joe was. Anna Walters in Buffalo, NY, claimed the Joe was actually Johanna Monaghan and at age eight, had been adopted by the Walters family. They had a picture of Joe with short hair, in masculine attire. Another possibility is the theory that Joe was a Buffalo, NY, debutant who bore an illegitimate son and was disowned by her family. Joe's sister raised the child, Laddie, who grew up to become a lawyer.

Either premise is plausible--neither can be proved or disproved.

Joe was buried in the local cemetary at the Hat H Ranch near Rockville. She took her secrets with her, leaving us to speculate what made a lovely young woman chose to live and die in one of the roughest of lifestyles.

Sources:

Websites
Owyhee County History

Books:
More Than Petticoats: Remarkable Idaho Women
Lynn E. Bragg

Historic Silver City: The Story of the Owyhees
by Mildretta Adams
Owyhee Publishing Co., Inc., 1969 (tenth printing 1999)

Jacquie

Down Home Ever Lovin' Mule Blues (See the Book Video featuring Justin Saragueta) Jacquie Rogers * 1st Turning Point * Myspace * Twitter * Facebook Faery Special Romances * Book Video * Royalties go to Children's Tumor Foundation, ending Neurofibromatosis through research.